Site News
Welcome to Cushing's Help and Support Newsletters!
These are all links to more information just click to read.
The New Voice Chats / Podcasts
These are going much better than my wildest dreams!
We actually have a backlog of people who want to be interviewed. This is so cool.
I hope that non-Cushies will hear these as well as the current message board members and see themselves or a friend/family member and get the testing that they need.
These stats will be updated at least once a week as new chats are added. Click to view image larger.
This Week, Thursday January 31 at 6:30PM eastern
Jayne Kerns is a Cushing's patient who had pituitary surgery and a bilateral adrenalectomy before finding the true source of her ectopic Cushing's.
Jayne also had a miracle baby despite her illness, which usually makes women infertile. She was featured in her local paper.
Jayne has seen several potential Cushies and spoken to them. Many have contacted their doctors and turned out to have Cushing's Syndrome. She was also instrumental in setting up the first Cushing's Awareness Day and continues to provide Cushing's Awareness tables at local health fairs.
One of the patients Jayne urged to check out Cushing's is Laura Zastrow. In the article about Laura, the credit is given to Jayne.
Read Jayne's newspaper article Baby boy is miracle to mother with Cushing's disease.
Join Jayne Thursday, January 31, 2008 at 6:30 PM Eastern
Future Guests:
Alicia (medcats10), February 7, 2008. Interview with Alicia, a Cushing's Message Board member who is still testing.
This show will be at 7:30PM (note later time!)
Karen (Rooon55), February 21, 2008. Karen's disease started when she was a little girl (7) and she finally got a diagnosis in 2005. She had cycling Cushing's, Thyroid disease, GH deficiency, and Auto immune Alopecia. She believes she is cured after two Pituitary surgeries.
A
doctor didn't advise Vermont's Karen Nolan (Rooon on the boards) that she might be one of the scant 3.5 per million people diagnosed annually with Cushing's disease - another Cushing's patient did. After reading Nolan's post on an Internet message board, another patient suggested Nolan's lab results and symptoms could indicate pituitary disease and that help might be found more that 3,000 miles away at Oregon Health & Science University. From Karen (rooon55), MedfordNews, May 15, 2006
Robin Smith (staticnrg), date to be determined. Interviewed by MaryO
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YOU???
Achived audio is available through the Podcast page of this site, BlogTalkRadio, the CushingsHelp Podcast or through iTunes Podcasts
Think of our podcast as a radio show on Cushing's. The show consists of many "episodes". You can listen on your computer, or your iPods, completely free of charge.
Cushing's Awareness Day, 2008
It's time to get ready for Cushing's Awareness Day again
MelisaTX has suggested these ideas for this year's compaign in this thread:
1) status of the Cushing's Awareness Day legislation... who has signed, who do we need to get? I have contacts to the US congressfolks from Houston, and I wanted to get them to sign if they have not. Can we get someone to testify before Congress? Can we get any federal funding? Can we rally with other rare disease groups to get in front of that mic on CSPAN?
2) can we do a fund drive for the month prior to April 8th in order to fund all of our projects and this site? can we keep track of how much each board member raises with little thermometers that show how much is collected, in order to get people excited about how much money is being generated?
3) can those who have had surgery in the past year right up there story to be published on April 8th for awareness day? I hope that planning this far in advance will allow us to get more articles published. Perhaps those who already had surgery can ask the paper to re-run their story with an update and reminder about awareness day.
4) can someone can write a press release to the news channels to get coverage for awareness day
5) we get someone to create a very nice postcard that we all can print from our home at our expense on card stock. Then we each pay for the postage to send the cards to all of our friends and families. Perhaps we can ask our family and friends to donate money to us that we can then donate to this board...
6) I need a Cushing's bumper sticker! I know there are some for sale on the store site, but I was wondering if we can get some heads on this project to get something really catchy. I would put one on my card if we could get a really cool design going... any graphic artists wanna take this up?
7) I love the radio blog shows. I think they are so great. Perhaps we can add that icon to all of our Myspace, Facebook, and personal websites. Do we have an icon that we can post to get people to this site?
8) Have people set up care pages to keep friends and family informed about all the tests, doctors appts and then following us through surgery and post op. I have over 65 people subscribing to my care page, and I am confident that those 65 people didn't know anything about Cushing's until I told them about it. If we inform little circles of 50 all around the US and world, then we will be doing a great job increasing awareness. It is free, and I love mine. I control the tone of the site, and no one talks back to me there!
9). What can we do in the medical community? I'd like to see us patients doing more to lead the doctors down the proper path.
----- Do we get a booth at a national endocrinologist conference and pass out information we want them to know, with Cushies staffing the booth?
----- Do we develop a pamphlet specifically for doctors?
----- Do we start a partnership with the national association of endocrinologists (not sure if this really exists, but you know what I mean) and work together to get more research done on Cyclic Cushing's by offering ourselves up as research participants?
10) Perhaps we contact every Women's health magazine on the market and submit some articles in February for consideration of their April magazine.
11) Perhaps we buy the google ads based on key words that appears in email. The links pop up on the right side bar while people read their gmail or other online email. If the person says ponch, fat, or other key words, then the side bar will give a link to this site.
12) We can distribute DVDs of Kate's show and the two mystery diagnosis shows (Sam and Sharmyn) to doctors and endos? To new Cushies? This will take some money for DVDs and postage, but if we focus on raising some money, then we can allocated funds to these worthwhile expenses. Now, I am not sure if we need permission from Mystery Diagnosis or Nat Geo for that, but someone can take this project and get all the details.
I'd like to see us set up a goal-driven campaign for Cushing's Awareness Day. This will really help motivate us into seeing how much interest and good we are generating as a group.
# of newspaper articles submitted
# of newspaper articles publised
# of magazine articles submitted
# of magazine articles published
# of dollars raised
# of dollars allocated to outreach (keyword ads in gmail and others, etc)
# of carepages set up
# of care page followers (in friends and family.. I have 65 already)
etc.
If we each decide to lead a project to get all of this taken care of, we could be in a very good position to launch a really big Cushing's Day Awareness in April.
I am really looking forward to seeing all the creativity that exists of the minds of my brilliant Cushie friends!
So, please, if you could take moment to add suggestions and brain storm here. The list I came up with is right off the time of my head, as I have no knowledge of what's been done before. Please take the list as simple suggestions in an effort to see how many 'stick' and how many we can tweak to produce a great product.
Media: Cushing's Awareness Day, April 8, 2008
Add your thoughts to MelissaTX's Ideas
Also on the Website...
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Weekly Chat Reminders, Voice (Call-In) Chat Reminders, new podcasts, Meeting / Webcast Notifications and Occasional Newsletters are back! Sign up to take advantage of this returning feature. Register here
Read this Newsletter online
Cushing's Help and Support Printable Brochure
Cushing's brochures that are sent out with the Cushing's Awareness Wristbands. Print them on special tri-fold brochure paper for the best effect. Newest version includes the new podcasts, voice chats and has a Columbus, OH picture.
Newest Helpful Hint:
MelissaTX's tips for new patients: How to steady your feet and get diagnosed quickly
Cushing's Books
Latest Testimonials:
I so enjoyed the interview with Cushing's Help Founder, Mary O'Connor. Jayne, you did a great job! I've had the pleasure of knowing Mary since before Cushings-Help.com became a reality. Mary puts an unusual amount of time and effort into her incredibly informative and invaluable Web site. Mary IS Cushing's Help. If there's any new technology where Mary can spread the word about Cushing's, she'll find it. This new blogtalkradio is another excellent venue where Mary can continue her endless help for those suffering from Cushing's and related disorders. I'm personally so proud of all that she's accomplished, especially when through it all, she's still dealing with her own health issues, but that doesn't stop her! I'm proud to call her my "friend." Keep up the good work, MaryO! Alice Stamm (aka Dearest)
Thank YOU. I've been on the website quite often in the past few months as my daughter is being diagnosed, and it has been so helpful to have more information. This has been a very difficult time and I can't imagine it without the website you have created and foster. I feel like you are saving our lives.
"First of all I want to say THANK YOU for this website! I feel like I am going crazy! It was a blessing that I found this site and I wish I would have found it years ago. The support that I have received on here has been just awesome. I have not been a member very long and I am still trying to figure out somethings but I feel like I have friends everywhere around the world. The only place that I feel a little sanity is here. I had felt so alone in my struggles with my son, nobody understands exactly how you feel unless you are or have been through it also. I am so glad to be able to talk to people who know how I feel and what I am going through. I have been fighting for my son for 8 years and I will not stop until I get a diagnosis and the correct treatment. It is so hard watching your child knowing they are sick and not being able to fix them. If he does get accepted to NIH it would be wonderful to meet you.Thanks again for all the information and the on going support that you give. For once I don't feel alone!"
I LOVED YOUR RADIO INTERVIEW. VERY INTERESTING AND COOL. MY MOM EVEN SAT AND LISTENED WITH ME. SHE WAS AMAZED ON HOW LONG YOU WERE SICK FOR.
"Thank you so much! I feel for all of you and I'm so glad that you have taken the time to set up this site! It's WONDERFUL! I know that seems odd when you are all dealing with something so awful. I can't even imagine what it's like to have to deal with this daily and then to have the time to keep up this site but I for one THANK YOU for doing it!!"
Upcoming Chats
Next Scheduled Text Chat
Wednesday, January 30, 9PM Eastern. The Chatroom is open 24/7
Next Voice Chat, January 31, 6:30 PM Eastern. MaryO will interview Jayne, long-time Cushing's survivor. Call-In number (646) 200-0162
Archived VOICE Chats
Listen live to archived interviews with MaryO, Judy and Jess, Robin (staticnrg) hosting. Call-in guests on other episodes included Mertie, JenS and Judy Colby. Nearly 800 listeners...so far! Achived audio is available through the Podcast page of this site, BlogTalkRadio, the CushingsHelp Podcast or through iTunes Podcasts
Upcoming Meetings
Upcoming meetings include:
- Santa Monica, CA
- UVA Pituitary Days
- ENDO 08, San Francisco, CA
- Endo 2009, Washington, DC
- Endo 2010, San Diego, California and
- tentative meetings
Newest and Updated Bios
Add Your Bio
In Memory:
Lori Holt passed away on Sunday, January 6, 2008. She was hopeful that the surgery would help her, and loved and appreciated her many friends and others who supported her. Thank you to everyone here who knew her and offered encouragement and hope.
New Bio January 28:
Tracey (Tracey) is from Bethlehem, Pennsylvania. She was diagnosed with pituitary Cushing's in October 2007 and will have surgery at Johns Hopkins in February 2008.
New Bio January 28:
Gail is from Warrington, UK. She is not diagnosed with Cushing's but is a diabetic and has trouble keeping her sugar levels down even with insulin.
New Bio January 28:
Stephanie is from Prince George, Canada. She was diagnosed with adrenal Cushing's in July of 2007 and had her left adrenal gland removed in November, 2007. She is still on prednisone and has pain on her side.
New Bio January 28:
Mary (marym) is from Grand Blanc, Michigan. She has not had a positive diagnosis for Cushing's as of yet. She has been diagnosed with PCOS and subclinical hypothyroid.
New Bio January 28:
Alicia (medcats10) is from Tucson, Arizona. She is not yet diagnosed with Cushing's but has many symptoms. Alicia will be the subject of a Live Interview in the Cushings Help Voice Chat / Podcast series February 7, 2008, 7:30 PM. Archives will be available after the chat.
New Bio January 28:
Renai (rossi) is from Australia. She is not yet diagnosed with Cushing's but has many symptoms.
Updated Bio January 28:
Hallie (hrgendron) is from Boynton Beach, Florida. She is not diagnosed with Cushing's but has Grave's Disease and has had her thyroid destroyed. Hallie has many Cushing's symptoms and has updated her bio with more information.
New Bio January 24:
Ellyse (ellyse) is from Cumming, Georgia. She had her left adrenal gland removed in January, 2008 and wants to lose weight for a wedding in May.
New Bio January 24:
Bexx (Bexx) is from New York, New York. She has struggled with her health since she was a small child around the age of 7 or 8.
New Bio January 24:
Dick (Dick) is from Harrison City, Pennsylvania. He has had extensive MRI's CAT scans and PSST to locate a tumor in his body. As a result of these tests he has had two surgeries in the past two and a half years. One to his thymus that was successful and one to his pituitary. He still produces a large amount of cortisol.
New Bio January 24:
Christine is from East Rutherford, New Jersey. She had transphenoidal removal of a pituitary macroadenoma on July 11, 2006. She had remaining tumor growing around her carotid artery that was inoperable. She also had Gamma Knife surgery on December 12, 2007.
New Bio January 24:
Karen (Karen) is from Austin, Texas. She had her right adrenal gland removed January 7, 2008. She has some questions about her cortisol replacement. Karen has also indicated that she is interested in being interviewed during a CushingsHelp Voice Chat. More information on that will be provided after the date and time are set.
New Bio January 22:
Dodie (Dodie) is from Maria Stein, Ohio. She sees Dr Friedman. An MRI showed a posterior pituitary tumor.
New Bio January 18:
Karen (Rooon55) Karen's disease started when she was a little girl (7) and she finally got a diagnosis in 2005. She had cycling Cushing's, Thyroid disease, GH deficiency, and Auto immune Alopecia. She believes she is cured after two Pituitary surgeries.
New Bio January 18:
Shawna (bbwinbama) is from Cullman, Alabama. She was diagnosed with Cushing's Disease January 14, 2008 after having symptoms for many years.
New Bio January 18:
Jodi is from Kenton, Ohio. She is not yet diagnosed with Cushing's but has many symptoms. Her dex suppression test came back normal but her doctor doesn't believe the results.
New Bio January 16:
Jenny (Jenny1107) is from Champlin, Minnesota. She is not yet diagnosed with Cushing's but has an appointment with an endo January 24, 2008.
New Bio January 16:
Trena (Trena001) is from Pilot Mountain, North Carolina. She thinks that her daughter may have Cushing's. Trena's son was diagnosed with Hodgkin's Lymphoma and their doctor thinks it would probably be near impossible for two children in the same family to have unrelated rare diseases.
New Bio January 16:
Barbara (Barbara522) is from Andover, Kansas. She was diagnosed with Cushing's last year and will need to have a Petrosal Sinus Sampling soon.
New Bio January 15:
Michelle (emilysmommie) is from Corona, California. She is not diagnosed with Cushing's but has many symptoms. She has had a 24-hour UFC which came back in the normal range. Her endo suggested Meridia.
New Bio January 14:
Mark (Mark) is from Louisville, Kentucky. He has Addison's Disease and would like to meet others who have this disease.
New Bio January 13:
Babette is from Las Vegas, Nevada. She had laproscopic surgery for PCOS and took Clomid. She was successful in finally having a miracle baby.
New Bio January 11:
Hayley (silverstarprincess) is from South London, England. She doesn't have a full diagnosis yet but hopes to find out in a few weeks.
New Bio January 11:
Leigh (crazyduck) is from French Settlement, Louisiana. She is not yet diagnosed with Cushing's but has many symptoms. She has just had several tests and an MRI or her pituitary gland. All that the bloodwork shows so far is that her thyroid is out of whack.
New Bio January 11:
Kristin (KWDesigns) is from Portland, Oregon. She has ACTH Independent Cushing’s Syndrome and will have adrenal surgery January 29, 2008.
New Bio January 11:
Rach is from Provo, Utah. She is now 21 and has been diagnosed with Cushing's 3 different time and she has had 3 transphenoidals and stereotactic radiation.
New Bio January 10:
Michelle (MCheri) is from Penrose, Colorado. She has a pituitary gland tumor and will have surgery in February, 2008. It isn't prolactin producing but she isn't sure if it's Cushing's yet or not.
New Bio January 9:
JoAnn (flojo3) is from Thunder Bay, Canada. She is not yet diagnosed with Cushing's but a recent ultrasound of her kidneys showed an abnormality in her adrenal glands.
New Bio January 8:
Nate's wife (nderolph) is from Newark, Ohio. His wife was diagnosed with Cushing's about 2.5 years ago. She has had two pituitary surgeries and has just had a second recurrence.
New Bio January 7:
Judy H (Judy H) is from California. She first saw an endo in September 2006 and was diagnosed on October 26th, 2006. Judy had ectopic Cushing's due to a tumor on her lung which was removed in November 2006.
New Bio January 6:
Travis is from Morgan City, Louisiana. He had ectopic Cushing's caused by a carcinoind tumor. He also had a pituitary tumor removed.
Updated Bio January 6:
Jody (jodiann) is from Tacoma, Washington. She was diagnosed with Cushing's syndrome about 3 years ago. She also was diagnosed with bliateral multinodular adrenal hyperplasia. Her mom died from complications from a bilateral adrenalectomy (BLA) in 1978. She had Cushing's syndrome with pheochromocytomas. Jody updated her bio in December 2007 and January 2008.
New Bio January 4:
Liv (Liv) is from Rochester, Washington. Her mother has Cushing's and Liv is unhappy with the testing that her mother is having locally.
New Bio January 4:
Lisa (ldyaquarius) is from Columbus, Indiana. She is not yet diagnosed with Cushing's but she takes prednisone for asthma and Bells Palsy. She wonders how she will get better if she can't get off the steroids.
Endo News
Endo News January 22:
Classical Forms of Congenital Adrenal Hyperplasia due to 21-Hydroxylase Deficiency in Adults During childhood, the main aims of the medical treatment of congenital adrenal hyperplasia (CAH) secondary to 21-hydroxylase are to prevent salt loss and virilization and to attain normal stature and normal puberty...
Endo News January 22:
Evaluation of the Pituitary Function with Insulin Tolerance (Hypoglycaemia) Testing: Are There Any Differences Using Insulin Lispro Compared to Regular Insulin? Background/Aim: The insulin tolerance test (ITT) remains the gold standard for evaluating the pituitary function, but has potential risks when hypoglycaemia is induced. There are scarce data using short-acting insulin analogs for ITTs. This pilot study compares the effects of insulin lispro (LPI) with regular insulin (RGI) during an ITT...
Endo News January 16:
RxTrials Institute Drug Pipeline Alert Hypothalamic-pituitary insufficiency may have diverse causes. The aim of this study was to determine the incidence of hypothalamic-pituitary insufficiency in patients with previous infectious diseases of the central nervous system (CNS) of different etiologies and mild-to-moderate clinical course...
Endo News January 16:
The Diagnosis of Polycystic Ovary Syndrome: The Criteria Are Insufficiently Robust for Clinical Research Polycystic ovary syndrome (PCOS) is a common disorder but has considerable phenotypic variability and this has led to controversy over its exact definition and diagnosis. The objective of this study was to review the recently proposed diagnostic criteria to determine whether they were sufficiently robust for clinical and research practise...
Endo News January 12:
Hypothalamic-pituitary insufficiency following infectious diseases of the central nervous system Hypothalamic-pituitary insufficiency may have diverse causes. The aim of this study was to determine the incidence of hypothalamic-pituitary insufficiency in patients with previous infectious diseases of the central nervous system (CNS) of different etiologies and mild-to-moderate clinical course...
Endo News January 10:
Pediatric Pituitary Adenomas A total of 20 patients, including 12 females and 8 males, comprise the study group. Mean age at onset of symptoms was 14.0 years (range, 5–18 years). Four patients had onset of symptoms before the age of 12 years. The majority of patients presented with headaches (n = 12), visual disturbances (n = 12) or, in females, menstrual dysfunction (n = 9/12). Tumor size based on radiographic data was known for 19 tumors; 12 adenomas were greater than 1 cm in greatest dimension, and 7 were less than 1 cm. On follow-up, 2 patients with total gross tumor resections had recurrent adenomas; time to recurrence was 5 months and 17 months, respectively. Nine adenomas stained solely for prolactin, 5 for adrenocorticotropic hormone, and 3 for growth hormone. Two stained for growth hormone and prolactin. One did not stain with hormone antibodies...
Endo News January 9:
“Subclinical Cushing’s syndrome” is not subclinical: improvement after adrenalectomy in 9 patients Overall, 24 patients underwent adrenalectomy for adrenal cortisol hypersecretion, of which 9 were found to have subclinical Cushing's Syndrome. Median serum cortisol was 2.0 ?g/dL (range, 1.1–6.1) after 1-mg overnight dexamethasone suppression testing. Suspicious clinical findings on preoperative examination included skin bruising, unexplained weight gain, proximal muscle weakness, abnormal fat pads, skin thinning, fatigue, and facial plethora. During a median follow-up period of 5 months (range, 1–30 months), all 8 patients with easy bruising noted resolution postoperatively. Fatigue improved in 4 of 5 patients, muscle weakness in 6 of 8 patients, and weight in 7 of 9 patients, with a median body mass index change of –2.0 kg/m2 (range, –7.1 to +0.5 kg/m2)...
Endo News January 9:
Expression of vasopressin receptors in ACTH-independent macronodular bilateral adrenal hyperplasia causing Cushing's syndrome: molecular, immunohistochemical and pharmacological correlates Cortisol secretion in ACTH-independent macronodular adrenal hyperplasia (AIMAH) causing Cushing's syndrome can be controlled by illegitimate receptors. The aim of the present study was to characterize the molecular, immunohistochemical, and pharmacological profiles of vasopressin receptors in cells derived from three patients with AIMAH (H1–H3), in order to evaluate the role of ectopic vasopressin receptors in the physiopathology of hypercortisolism...
Endo News January 8:
C-Reactive Protein and Cushing's Alicia writes: "I came across this article about c-reactive protein. I was interested in it because I have elevated c-reactive protein, and that has thrown the doctors off because they think that that means I have some underlying autoimmune thing going on. Well this article is really interesting..."
Endo News January 6:
Pituitary adenoma ACTH cell adenomas : clinical manifestations of the physical concentric obesity moon face, buffalo back, more blood quality, abdominal skin with large purple leg stripes, like the increase in vellus hair. Severe amenorrhea, the loss of libido, malaise, or even bedridden. Some patients with hypertension, diabetes and so on...
Endo News January 4:
FDA Accepts Samaritan's Cushing's SP-6300 IND and Clears Phase II Study The U.S. Food and Drug Administration (FDA) has completed its regulatory review of Samaritan's IND (Investigational New Drug) application for Cushing's syndrome SP-6300 and declared it has not identified any deficiencies in its IND filing. Accordingly, Samaritan can proceed with its proposed Phase II clinical study of Cushing's syndrome SP-6300's efficacy in patients experiencing Hypercortisolism...
Endo News January 2:
Laparoscopic surgery is safe for large adrenal lesions The purpose of this paper was to assess the safety of laparoscopic adrenalectomy in large adrenal tumours. Because of its many advantages over conventional open surgery, laparoscopic adrenalectomy has become the preferred approach for removal of benign adrenal tumours...
